Death seems to be the hardest word in end-of-life planning


By, Cece Lentini

For Inside Jersey

One night about 30 years ago, Nancy Gross' 74-year-old father didn't come home. As the evening wore on and Gross and her mother grew increasingly worried, they began calling hospitals.

When they finally located him at Bellevue Hospital in New York, they learned he had died suddenly of a heart attack while in the subway.

It was a devastating experience. But almost as difficult for Gross was the realization that her parents had never talked about, or planned for, their deaths.

"It was a pivotal point for me," says Gross, who soon afterward began a habit of volunteering with palliative care and hospice organizations that continues to this day, even as she works as a humanities educator at Overlook Medical Center in Summit. "My parents were devoted to each other and my mother was absolutely shattered. She said 'How could this happen?' Death wasn't something they had talked about or planned for. It wasn't something that was in their conversation."

Gross, 66, who cared for her mother through her last illnesses until she died in 2009 at age 91, says her experiences with her parents changed her life, guiding both her career choices and her volunteer activities. It also has made her an advocate not only for advance care planning around the treatment and care desired at the end of life, but also for the importance of sharing those wishes with the people you love.

"I don't think conversations were as explicit back then," she says of her parents. "My husband and I talk about these things much more openly now. We have long-term care insurance and advance directives that we completed with our lawyer. But about five years ago, I woke up very early one morning and wrote my own advance narrative directive. I wanted to tell people more specific things that I would like to happen, not the things I would not like to happen."

To be sure, death is a difficult topic, and planning for one's death is harder still. Many people will never be able to have such conversations, much less make decisions about the medical treatments and care they would like to receive, or not receive, and then share their wishes with their loved ones.

Even Gross, who had many conversations with her mother throughout her last illnesses and hospitalizations, and feels comfortable about the care her mother received before she died, says that circumstances may dictate something different.

Familiar documents such as advance directives, though drawn up by an attorney, are not always available to, or legally binding on, a physician. And in emergency situations, EMTs and physicians, says Gross, are trained to do all they can to save a life regardless of what the results might be for someone already critically ill.

"I may add an addendum to my own advance directive, spelling out even more specific things I would like to happen and things I would like not to happen," she says. "But that doesn't mean it's going to happen that way."

THE CONTROVERSY THAT ERUPTED in 2009 when former GOP vice presidential candidate Sarah Palin famously, and falsely, claimed that under the Affordable Care Act government "death panels" would determine the fate of senior citizens and the disabled, seems to prove that most people don't want end-of-life decisions imposed on them by others.

Indeed, people whose work involves caring for those with advanced illnesses through palliative or hospice care say surveys consistently show that most of us think advance care planning is a good idea. It's just that we don't do it.

Consequently, it's quite possible that in the closing days of our lives, when we are least able to articulate our wishes, many of us will receive treatments we might not want in places we would rather not be.

"People think that if they don't talk about something, it isn't going to happen," says Jay Lippman, medical director for Bayada Hospice in Jersey City. "They also think that if they talk about something, it will be encouraged to happen. People always think that it is too soon to have the conversation. But the truth is that it is always too soon until suddenly it is too late."

If these conversations prove difficult, it may be possible to find a caring professional outside the family, such as a social worker, who can help. Increasingly, physicians are being viewed as those best able to answer questions about the realities of end-of-life treatment and care.

This was underscored in 2016 when Medicare, for the first time, made it possible for physicians to bill for time spent in advanced care planning conversations with patients.

In the first six months of 2016, according to the latest figures available from the Centers for Medicare and Medicaid Services, almost 15,000 Medicare beneficiaries in New Jersey participated in an advanced care planning conversation with their physicians.

Waiting until you are old enough to participate in Medicare, however, is not the best time to start advance care planning, says Stephen Goldfine, chief medical officer at Samaritan Healthcare and Hospice in Voorhees. Goldfine, who leads training sessions for health care professionals in how to communicate about end-of-life care, says he believes family physicians should broach the topic during every annual physical exam, along with discussions about such things as diet, exercise and the importance of wearing a seat belt.

He also believes this conversation should start at age 18, when people legally become adults. Goldfine notes that some of the most highly publicized and emotionally charged end-of life court cases, including Karen Ann Quinlan and Terri Schiavo, involved young women in their 20s, who fell into chronic vegetative states before indicating how they would like to be treated in such a situation.

"Eighteen is a tough time to have that conversation," he says. "But it is sad for me to see a 29-year-old in a chronically vegetative state being kept alive (on machines). It may be my personal bias, but surely we should ask: 'Do you want to be kept alive, or just allow us to keep you comfortable until you die?' "

FOR MANY PEOPLE THE NEXT STEP is to visit an attorney, who can prepare an advance directive, which addresses an individual's wishes for treatment if they became incapacitated and could not speak for themselves. Another legal document, the do not resuscitate order (DNR), specifies that an individual does not want cardiopulmonary resuscitation (CPR) if his or her heart stops.

For those who prefer to go it alone, another option is a widely used document called Five Wishes that is offered at for $5. It substantially meets the legal requirements for living wills in New Jersey and 41 other states, and also is a way for adults to spell out how they want to be cared for in case they become seriously ill or incapacitated.